I wrote this letter to the folks at the Social Security office who have been busy declining my applications for disability. By posting it here, I hope it might help you understand where I am, or at least where I was last June.
I’m not looking for sympathy – just understanding. Of why I don’t call. Or return an email for days. Or come visit. Or whatever.
June 11, 2009
My Story, by Kelly Collins
To the person who sorts through my file to make a decision –
I wanted to write to you personally, as to date all my paperwork has been filled in by the good folks at Access Independence. I know they have done an excellent job, but I needed to let you hear my story in my own words. It’s hard for anyone to understand the twists and turns my life has taken, and where I’m at right now, and I hope this will make it easier.
I never planned on being on disability, swore I wouldn’t be, and I didn’t just quit a job because of being ill, I had to close – abruptly – a thriving business of almost 10 years, losing the only form of income we had, and losing the only thing I’d ever done in my whole life that had supported me and my daughters comfortably (I‘m a single mom due to divorce).
Now, we live off welfare, and I live out of my bed – I eat there, watch tv there with my daughter when my migraines subside enough, sleep there, rest there, and only rarely leave home, only for doctor’s appointments or for periodic shopping. Just doing that leaves me completely exhausted , and not just for that day, for several days afterward. My house is a disgusting mess, as just sweeping the floor is enough to send me into a fever of 102 degrees and leaves me feeling like I’m about to faint.
I used to climb mountains, garden organically and sell produce at the farmers market, raise sheep and horses and compete in horse shows. Now, I struggle to complete one load of dishes before the pain in my back becomes so severe I can’t stand up anymore.
I used to work on the computer for hours every day, but now, I can only work on it briefly, as it causes my nearly daily migraines to flare up, and sometimes I go weeks without even checking my email. I used to read copiously, novels mostly, but now I can’t remember the plot line well enough to read a book, so I read magazines.
This is about work, so we start there: In 1997 I was a single mother of two, newly divorced, with no college degree, and no job. The internet was just blossoming, so I took advantage of it by starting my own business online, selling jewelry and gifts from all over the world, though primarily Celtic in nature – Irish, Scottish, etc. It took off more than I ever expected to become an amazing retail e-commerce site, which I was able to run entirely from my home, and most of the time, entirely by myself.
But, in 1999 I became ill with the flu, and didn’t get better, leading to a diagnosis of Fibromyalgia. I had – and still have – all the symptoms, from pain to extreme fatigue, bowel troubles, sore throats, fevers, “brain fog,” etc.
As the years have passed, I have felt worse and worse, and I was told I also had Myofacial pain syndrome, neurally mediated hypotension, reactive arthritis, then hypothyroidism, gallbladder troubles, and weirdly high levels of Epstein-barr, parvo virus, and herpes, and eventually, late stage Lyme disease, plus more.
I adapted my business as the years passed and I became more and more ill, being able to work when I felt up to it, then take a nap, then get up and work a while longer. I bought a laptop and a big soft recliner so I could do most of my work, on the computer, in a more comfortable environment. My eldest daughter helped, and as I got sicker, I hired an employee to work part time.
Though it was a terrible struggle, trying to keep caught up with the orders that came in every day from customers all over the world, needing to enter them, process their credit cards, and pack and ship their orders, I was determined I was not going on disability. My primary doctor, Dr. Zackrison, first told me I needed to stop working in 2004, as I needed to focus on getting well, be able to rest more, and be relieved of the stress of the business.
It was the first time in my life I was making a good living on my own, and rather than advertising for more customers, I had as many, or more, than I needed. By 2006 I was in my 9th year, but I was sicker than ever, and life had become about nothing but work and sleep – literally. If I was awake, I was working, every minute, even while I ate, except for an hour I stole at night to be with my younger daughter. But I had no choice, as the orders kept coming in.
But then came a positive Lyme disease test, and the knowledge that I’d probably had Lyme for at least 7 or 8 years, and it was affecting my whole body. It explained the downward spiral of health, and the symptoms matched up perfectly. I reluctantly started on a year long course of IV antibiotics, which made me terribly ill.
I became so weak, so exhausted, that I could barely get out of bed at all, and work became out of the question – I was struggling just to breathe sometimes, I was so tired. I was having seizures, sleeping 16 hours a day or even more. My part-time employee could not keep up with the business, and then he moved away. My elder daughter is in the National Guard, and was deployed to Kosovo, and couldn’t help.
My business just closed, abruptly, after Christmas of 2006, leaving customers in the lurch, after years of making sure they were always happy. I couldn’t answer the phone, couldn’t take and fill orders – I couldn’t even cook dinner for my daughter, so we started eating frozen meals, and she taught herself to cook.
When I finished my year of antibiotics, I was a mess, constantly bedridden. I slowly got a little of my strength back, but not much. I seemed to have stalled, and then began my downward spiral again.
Today, I still have a positive Lyme test. I still have the “brain fog” of Fibromyalgia, and can tell the Lyme disease has affected my ability to think – my memory is a family joke, my sense of the passage of time is non-existent, I often struggle to find the correct word, to make a simple decision, and if I’m very tired, such as when out shopping, sometimes I just can’t think at all, I just go into a fog.
Physically, I’m constantly exhausted beyond what most people can even understand. Doing anything, just getting out of bed, is hard, and takes determination. If I have to go somewhere, I load up with Ritalin and caffeine to keep me awake so I’ll be safe to drive, but they leave me with the jitters, literally shaking, sometimes running on at the mouth, with my thoughts jumping from one thing to another. And they don’t help the exhaustion, they just keep me awake, so I’m awake but sometimes almost too tired to move.
They don’t last long, either, or rather, I don’t last long. Just getting through grocery shopping is hard, and leaves me completely wrecked for the rest of the day, so I have to go straight to bed. And any activity, such as shopping, leaves me with a fever still, though so far no doctor I’ve asked can tell me why, other than to point at my constantly high viral titers.
Pain is a constant companion, though my meds keep it mostly under control so long as I stay in bed and don’t stress myself. Simple things like sweeping the floor, or doing a load of dishes, causes severe back pain so bad I simply have to stop and lay down. My neck often flares up, or my hip, or my ribs, and I always have a general all over ache. Muscle spasms are a constant.
And my right knee, which I blew out skiing years ago, is disintegrating slowly – it’s been ‘scoped three times, the last in 2000 or 2001, and is now getting really bad again, swelling up severely, and I can feel the bones grinding on each other, so I know I’m not far from a knee replacement.
Migraines have become one of my biggest obstacles, as they’ve gone from occasional, to weekly, to several times a week, and now sometimes last for days at a time, bringing waves of pain, nausea, and severe photo- and phono- sensitivity.
I still have to watch what I eat, though I have little appetite, because eating more than a little of anything causes me to bloat and develop stomach pain.
I’m going to be seeing some new doctors, and maybe they can help with where I’m at, I don’t know. They haven’t really helped before. I take so many meds, but I still don’t have a life, and my youngest daughter, now 14, takes care of me, and the household chores, far more than I take care of her.
This is not what I planned, but this is where I am. I hope you can try to understand. And I thank you for reading this.
This is an excellent letter and I’m glad to have read it. I couldn’t sleep last night, and had nightmares every few minutes!, so I gave up at 5am, soaked in sweats that had gone on all night. Sigh… I came here to read.
I recall writing on pen and paper, I guess it was in 2000, to the administration. They asked me to describe my worst day and at that time, it was all about depression. I had no idea that other illnesses could cause depression, although, with the life I’d led, and the traumas I experienced, it seemed a natural course and diagnosis.
I had to do the same (write to the disability determination board) with my son. I remember that letter even more clearly, as it was so hard to write his worst day and to allow myself to think the symptoms may not go away, which they didn’t. I cried so much I had to make many copies b/c I kept soaking them as I wrote.
It’s so hard telling people about what disabled means, personally.
I was just telling a new acquaintance that I have a disability and get a small income as a result. He asked if I hired an attorney. Told him no, and that my app was approved within about thirty days. Nearly unheard of, but I hadn’t worked in three years before applying. He said, “They probably approved you because you are nice and they liked you.”
It wasn’t ’til the next day that his remark hit me. I didn’t like it, but decided it didn’t matter one iota what he thinks, because everyone thinks something about it and most have an accusatory attitude.
I’m glad your application was approved! What in the world would we do without those benefits. I mean, truly! Now, when they send those papers for re-examination, I have so many diagnoses and doctors I’ve seen, that they don’t even go through with the investigation.
Being disabled is no fun. Some people think it is. Some people think we have it made! Not having future earning potential and not being able to clean our homes, and all the other things we used to take for granted and think was so easy, which are all now far from our reach, and mostly, not even a whisper of a hope that we could return to the state we were in before we gave up our businesses. (I used to plant butterfly and hummingbird gardens and it was so much fun! Why would anyone want to give that up?) My sister said to me while I was applying, that she wished I wanted more in life. She wished I wanted all that she had (from working).
I am 71, 72 in April and have FMS, CFS, and am in almost constant pain. My daily migraines improved when my naturopath found I was allergic to wheat but I still get them occasionally. I can hardly tolerate the pain of getting my teeth cleaned so they put a lot of some kind of pain reliever on by gums before cleaning which helps. I have been suffering from extreme pain for most of my life and I can relate with your problems. Everyone of us is so different as to what helps us. What helps me the most is my spiritual reliance upon God and His Son Jesus Christ and the Bible. Without that and my prayer life I wouldn’t have been able to manage the pain. I also have a very supportive husband who has stuck with me for 52 years and helps me in so many ways. I am very thankful for that because I complain a lot. I am sorry for those who suffer so much especially when there isn’t any support from those in the medical field. I too, had to quit working outside my home when the pain became unbearable. It is a struggle each day to be able to do much of anything as far as exercise and it always leads to more severe pain at night. Winter is coming on in north Idaho where we live and the cold winds and snow and low temperature lead to more pain. I do not want to take drugs of any kind anymore because I have taken so many over the years I have developed an ulcer and also I do not like their side-effects on top of all the pain I have. Thank you for your site and I appreciate your honesty. If you want you can e-mail me at email@example.com. I don’t look at my e-mail much so may not answer soon but I’ll be praying for you. Love, Your friend in Idaho, Carol Jacquot
I never saw this before tonight, dear Ash. I didn’t even know about your business, so many things we all have done BEFORE. I call it Before and After, that’s what our lives have become. Yes, I am finally seeing a Naturopath, I am so tired of 5 minute appointments and my internist walking out on me in difficult times. I need to be open to new things and now I am ready. I’ll let you know when I get the stuff which should be tomorrow. I read your letter, albeit an old letter and it still makes me want to weep. I still want you to be able to eat and gain weight. I hope that is happening. Love, Laurie
I'm Ash, and this is Wolfdreams. I mostly seem to be writing about living with ME/CFS, FMS, Lyme, and other chronic illnesses, lately, but I far prefer to ramble on (and on) about Life, dogs, nature, and spirituality. I'll try to get back to more of that!
Want to connect on Facebook? You can find me as Wolfdreams.
Send me an email to ashwolfdreamer (at) gmail (dot) com.
I am not a doctor, nor do I have any medical training. Nothing in this blog should be construed as medical advice. I am a long-time patient sharing my personal experiences and opinions with ME/CFS/FMS/Lyme. Always make your medical decisions in consultation with your own physician (and I hope you found a good one).